ALK Positive Australia Inc.

ALK Positive Australia Inc. is a patient-led, not-for-profit charity established by Australians directly affected by ALK-positive cancer-a rare mutation most commonly found in non-small cell lung cancer, but which can also occur in other cancer types. The organisation was founded to address the unique challenges faced by Australian patients and their families, who often found themselves navigating a complex healthcare landscape with limited local resources and support. Recognising that information and treatment pathways can differ significantly from those in other countries, the founders sought to create a dedicated platform for education, advocacy, and research tailored to the Australian context.

Mission and Vision

The mission of ALK Positive Australia Inc. is to improve the life expectancy and quality of life for Australians diagnosed with ALK-positive cancer. Its vision is a future where no patient or family feels alone in their journey, and where cutting-edge, locally relevant research leads to better outcomes and, ultimately, a cure.

Main Objectives

• Raise awareness of ALK-positive cancer and its distinct treatment options, such as tyrosine kinase inhibitors (TKIs), within the Australian community and healthcare system.
• Fundraise for research specifically focused on the needs of Australian ALK-positive patients, ensuring that donations made within Australia are tax deductible.
• Educate and empower patients, caregivers, and healthcare professionals with accurate, science-based information and practical tools for managing the disease.
• Advocate for equitable access to treatments and support services, and for the inclusion of the patient voice in research and policy decisions.
• Connect individuals and families affected by ALK-positive cancer, fostering a sense of community and reducing isolation.

Benefiting Groups

ALK Positive Australia Inc. primarily serves patients diagnosed with ALK-positive cancer, their families and caregivers, and healthcare professionals involved in their care. Membership is open to anyone in the Australian ALK-positive community, including patients, carers, and medical professionals, with no fees to ensure inclusivity.

Services and Activities

• Education: Providing up-to-date, locally relevant information about ALK-positive cancer, treatment options, and navigating the Australian healthcare system.
• Advocacy: Representing patient interests at national and international levels, participating in research committees, and lobbying for improved access to treatments.
• Research funding: Raising and directing funds to Australian-based research projects that address the specific needs of ALK-positive patients.
• Community building: Facilitating connections through online platforms, events, and peer support, helping individuals share experiences and practical advice.
• Awareness campaigns: Running initiatives to increase public and professional understanding of ALK-positive cancer and reduce stigma, especially around lung cancer.

By focusing on these core areas, ALK Positive Australia Inc. aims to fill critical gaps in support and research for a rare cancer community, ensuring that every Australian affected by ALK-positive cancer has access to the information, care, and hope they deserve.